The Path to Healing

October 11, 2015: Lily Pond at Arboretum

When trying to focus my blog posts for this month, it seems the most pressing question from folks is: what has created such a major turn around in my health over the past couple of years?

In looking back at my blog over the past three years, it looks like I virtually stopped posting major medical updates, challenges, trials or tests in January of 2012. Of course, I keep 'meaning to update' on what has transpired in the past three and half years, but the thought of doing so often leaves me overwhelmed. Brain fog and difficulty concentrating are still major symptoms for me. Each individual change or step forward didn't seem as big of a deal as it does now when I look at the cumulative effect of the changes my medical team and I have made. 

Add in the fact that in July of 2012 we brought home fur baby Number One, and in October of that year we brought home fur baby Number Two, it's clear my blogging took a back seat to those little ones.

One of My Favorite Spots at the Arboretum

I'd like to try to break down the changes into more than one blog post, but start here with a summary of what has transpired, and where we left off in 2012.

This is a detailed and complicated post. I don't know how else to approach my journey. Because if it's been anything, it's been complicated, complex and challenging!

I have provided brief summaries of the posts from earlier, along with a hot link to each one, for those of you want to refresh your memory, learn more, or explore things for yourself.

In January of 2012 I posted "13 1/2 Years Later: What Is This?" in which I wondered how, this many years into my illness, we still didn't have any answers, helpful treatments or understanding of the underlying cause of my symptoms. I was still being treated for Lyme disease and other co-infections along with trying to manage my ANS symptoms as best we could.

I was functioning in what my Lyme doctor, Dr. Complex, called 'an enormous status quo'. 

Shortly thereafter, I began the difficult journey of what I called "Paradigm Shift,"--working to accept the life I had been given, accepting my limitations, and living the best life I could within those limitations. It was a truly dark time in which I started to believe strongly that healing would not happen.

As I spent much of my emotional energy on this paradigm shift, I also went to see both Dr. ANS/Rowe and Dr. Lyme/Complex at the end of February 2012. 

It's funny how just as I was letting go of the thought of healing, unbeknownst to me, I was just about to begin finding some long-awaited answers and treatments to improve my quality of life.

During this 2012 visit, which I wrote about in the post "Out of Dissonance Comes Discovery," Dr. ANS said that he teaches his students that out of dissonance comes discovery, meaning that in my case he asked: "what doesn't fit with any of my other CFS and ANS patients?"

Looking back, I believe those two appointments in February of 2012--one with Dr. ANS and one with Dr. Complex--were the turning point in my path towards healing.

We, as a team, decided to discontinue the Lyme treatments. I have continued taking some supplements that I found helpful, but at that time I stopped treating for any type of infection. We felt that seven years of treatment was enough. (I remain agnostic about whether or not I did or did not have an infectious illness, but I'll save that for another time!) 

When Dr. ANS asked what made me different from ALL of his other patients, declaring me an 'n of 1', he felt that it was 1. my neck pain, 2. my lack of lightheadedness to the degree that other POTS patients experience it, and 3. my ANS response in general.

Dr. ANS does a very unique and thorough physical exam, including some neurological tests. He declared at this 2012 appointment: "this is NOT an normal neurological exam." An anatomical abnormality might cause such persistent symptoms because something (whatever it is that is going on) is causing a constant agitation of the ANS, never allowing it to calm down even with treatments aimed at doing so.

After the appointment it was hard to imagine pursuing new diagnosis almost 14 years into being sick. It was hard to believe we might be, in some ways, starting from scratch. Dr. ANS couldn't assure me that any of our new paths would lead to answers or be a 'slam dunk'. He encouraged me to approach the testing and new medications at my own pace--the pace I could manage emotionally.

At that 2012 appointment, I remember Dr. Rowe pointing to my HUGE medical file and saying he felt as if he looked through all of our exchanges, he'd keep coming back to my neck. Something is going on with my neck.

In "What The Neck Is Going On," I discussed the many ways we had previously explored possible causes for my neck pain--from cervical stenosis to chiari malformation. 

What we had not yet explored were some even more unusual anatomical abnormalities.

By June of 2012, I had gone through another series of MRIs--a thoracic one, as well as one of my neck in flexion and extension (one of the worst tests I've had to date!). Despite how much the MRI in flexion and extension caused a symptom flare and pain, it did not show anything but a beautiful looking spine with no compression. I discussed the details of this testing in "Dissonance or Discovery?"

Our next step was for me to see a vascular surgeon specializing in something called Thoracic Outlet Syndrome.

And this, it seems, is when I virtually stopped posting about what I was doing medically, other than a couple of posts on things like B12 shots and mestinon.

If your brain hasn't exploded yet, I applaud you for getting through this. I hope it helps to bring you up to speed on where things stood before improvements, new tools, and new answers were found.

I'll try to break up my medical posts with fun stuff, fundraising stuff, and dog blogs! :)

Be a dancing light,

Emily